Quote:
Originally Posted by Beannie
I'm still on my diagnosis journey...if everything is negative, how did the doctor decide it was still MG? I get the feeling that my doctors (and I've seen 3 neuros who all keep bouncing me around) don't have a clue why I would have symptoms and not test positive. I am an epidemiologist and and I understand the numbers and percentages; I'm not sure how much they put credence into someone's symptoms without some kind of medical sign. It makes me feel like I'm crazy, but why would someone fake increasing weakness/fatigue? I like to run! I like to be active! Why on earth would someone fake this? And how? I'm looking to hear from someone who may have been through something similar. I need some support.
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Hi Beannie,
I know about this craziness you feel. Why does this have to be so complicated??? All I know is that from my own reading a person can have MG and still test negative. None of my tests were positive. When I started feeling short of breath and then weak, I did not know anything about MG. I just kept searching for answers on the internet based on my symptoms and MG seem to fit. The Dr. I see is a pioneer in the field of MG and yet he is now questioning my relationship with my husband and if I am happy. Which of course, makes you feel that he feels I have these symptoms because I am stressed and having marital problems. While I am stressed, I developed these symptoms before I knew anything about MG. I too say, why would I fain shortness of breath, weakness to the point that I would have to do a little housework then sit down and rest or lay down. Granted, housecleaning is not my favorite activity but I don't like a messy home. I need organization and order. I also didn't want to spend 3 days cleaning a 4 room apartment (in our multi-family home which we now have sold). I used to be able to clean it in a little over an hour but now even our new place takes me much longer than it should. I feel sometimes like everything has slowed down. I can't seem to get anything done quickly like I used too. And I also know that all of this is not just in my head. So, where do you turn? It makes you want to just hibernate and just try to manage the best you can. So Beannie, I am at a loss too. I am still on Mestinon but not really sure how much it is helping. I need to go back and see the neurologist but why? I guess I would like to discuss why he asks me the questions he does about my personal life. Maybe why he thinks I don't have MG? Is it based solely on the negative results. What??? Why????
This whole thing is tiring too. Especially when you energy is limited.
I'm sorry I could not be more encouraging. I hope knowing that others are frustrated as well helps you not feel alone. I will keep you posted. Please let me know if there are any changes with you. Take care, Sherry